Patient and Provider Perspectives on Postsurgical Recovery of Cushing Syndrome

Rachel Acree; Caitlin M. Miller; Brent S. Abel; Nicola M. Neary; Karen Campbell; Lynnette K. Nieman


J Endo Soc. 2021;5(8) 

In This Article


The postsurgical recovery from CS may be long and challenging. This large cross-sectional study brings to light underrecognized patient complaints about the experience of recovery while supporting existing data about long-term sequalae of chronic hypercortisolism.

Educating Patients About Recovery

The problem of insufficient information from medical professionals about postsurgical recovery has been reported previously in small studies.[16,17] Our data support these findings; in our larger survey, one-third of patient respondents felt unprepared for recovery after surgery and wanted more information, whereas 16% reported that they felt that doctors gave them inaccurate information or were not knowledgeable about CS. Just over 10% named other patients, support groups, or their own online research as the primary source of information.

Although 100% of endocrinologist respondents provided oral or written information on recovery, 32% of patients denied receiving any information from a physician. This discrepancy may be influenced by the method of information sharing. Most physicians (62%) discussed recovery during patient visits; only 36% also used written materials. Use of multiple modalities and frequent review may be necessary, given the cognitive difficulties associated with CS. Written information about the patient's concerns/expectations or the multiplicity of potential experiences or might allow patients to feel understood, while providing a future reference.

The Duration of Recovery

Although 88% of physicians reported that they counseled patients about symptoms of remission, only 16.7% (8/48) reported advising that patients might feel worse before feeling better, or that recovery would be long. Several quotations illustrate the frustration of patients who were not told their recovery might span years (Table 5). Compared with endocrinologists, patients reported a significantly longer median duration of recovery (18 vs 12 months) and suggested a longer time to recovery after CRM cessation (8 vs 6 months, P = 0.05).

Time to recovery of adrenal function, defined as the time from successful surgery to cessation of CRM, differs according to CS etiology.[20] Our findings support that patients with adrenal etiologies of CS require CRM for longer than patients with CD. Notably, patients' reported time to recovery did not differ by CS etiology in our study, suggesting that adrenal function does not affect patients' perception of recovery. Patients who considered themselves recovered described a recovery time that significantly exceeded their duration of CRM, indicating this is a poor proxy for recovery.

Sex and Recovery

The impact of sex on the recovery experience is unclear. Although some studies found that women report greater impairment in some components of HRQOL,[10,12,21] others found no influence of sex.[11,18,22] Our results showed no statistical difference in perception of recovery between men and women, nor in prevalence of fatigue, depression, joint pain, or mental exhaustion. As with most studies of CS, our study included more women than men.

Coping Mechanisms During Recovery

The majority of patients and physicians cited family and friends as a helpful coping mechanism during recovery. Familial involvement in chronic disease management promotes self-management of disease as well as cohesion among family members.[23,24] Including family in discussions on recovery also aids patients in later recall of information. Physicians can better harness the power of social support by sharing information on recovery with family members early in the recovery process. A small but striking subset of patients highlighted challenges in familial relationships: "my family just thought I was just crazy," "[my family] think I'm just lazy," and "recovery was very detrimental to my family and marriage."

Physicians differed from patients in their opinions on useful coping mechanisms during recovery. Although there was agreement that supportive friends and family were helpful in recovery, significantly more physicians than patients cited work, exercise, and activities as helpful, and rest as less helpful, suggesting physicians may overestimate patients' physical abilities during recovery. By contrast, significantly more patients than physicians cited religion, entertainment, and massage as helpful in recovery. Patients' desire for spiritual care is frequently overlooked by providers or is confined to end-of-life care.[25] Our finding underscores this and suggests CS patients may benefit from questions from their provider to regarding their desire for religious or spiritual engagement throughout recovery.

Physicians also must consider the benefits of adjunctive nonmedical components of mainstream medicine; in addition to massage, patients espoused warm baths, hot tubs, Epsom salt soaks, acupuncture, and meditation. Encouraging patients to trial adjunctive tools during initial education may reduce frustration during recovery. Additionally, referral to a physical therapist acknowledges and addresses the reality of physical limitations. Physicians also may remind patients to engage in pastimes they enjoy, while recognizing that more physically and cognitively demanding activities may not be best for everyone right away.

Furthermore, as part of a multidisciplinary approach to recovery, patients may benefit from referral to a mental health professional. The lasting cognitive and psychiatric effects resulting from chronic hypercortisolemia are well-established.[6,14,26,27] In our study, 11% of patients endorsed postoperative depression, although this is likely to be an underestimate because these responses were collected from an open-ended question on the experience of recovery. Regardless, mental health professionals may support patients in the absence of overt psychiatric disease. For example, others have suggested that reduced self-esteem may contribute to discouragement and decreased engagement in the recovery process.[14,28] Difficulty with weight loss, endorsed by 14% of patients in our study, is 1 possible driver of reduced self-esteem. One patient offered, "The weight gain makes me feel horrible about how I look." Another remarked, "I had a big problem with my body image after I lost weight after recovering. I still don't feel very comfortable with my body." Therapy can offer patients tools to cope with these challenges

Our findings lend credence to prior research showing improved HRQOL and/or self-efficacy in patients with diabetes mellitus,[29–31] chronic kidney disease,[32] chronic heart failure,[33] and cancer[34,35] who participated in educational programs. This fits well with the phenomenologic characterization of patient goals to understand their illness and create a cognitive framework of what may be expected.[36] Patient-centric educational programs typically involve education on disease pathogenesis, diet and physical exercise, stress reduction methods, medication management, and recognizing disease-specific emergencies. In particular, the self-management tools do not fit a medical paradigm that lumps patients into a diagnostic category with variable prognosis, but rather focus on individual experiences and ways to alleviate those problems. Given the protracted nature of CS recovery and survey respondents' desire for information about recovery, similar interventions may be beneficial in CS. Disease-specific support groups, endorsed by nearly half of patient respondents, also can assist because many offer written materials[37–39] and provide forums on recovery where concerns can be addressed from the patient's perspective.

The Unexpected Utility of Open-ended Questions in Understanding Recovery

Many respondents did not answer questions with drop-down (fixed) answer choices but gave them in a final open-ended question asking about additional thoughts. For example, less than 3% of survey respondents answered a fixed-answer question about joint pain during recovery, but 19% of respondents included comments about musculoskeletal pain in the open-ended question. Possible explanations for this discrepancy include cognitive difficulties leading to lack of focus or inability to synthesize experiences into a conclusion.

It is also possible that patients do not relate to the experience of "joint pain," but will endorse "pain in back and feet," or "feeling as though my legs might break." Few patients answered a closed-ended question that asked about "lethargy (lack of energy)," but 45 included, for example, "lethargic," "tired," "fatigue," or "lack of energy" in an open-ended question. An open-ended question about mental exhaustion also elicited a variety of responses: "have to reread in order to grasp the context," "forget simple words," "moving underwater feeling," or "couldn't make the easiest decisions, for example between a blue or red shirt."

The implications of the differences in closed and open-ended responses are important. The diversity of responses we observed underscores the danger of relying on closed-ended questions when interviewing patients about their symptoms. Patients, particularly those experiencing cognitive difficulty, might have trouble identifying their subjective experience of what the medical community calls "lethargy" or "memory problems," thereby causing a provider to misjudge recovery progress or even overlook the diagnosis of CS. Understanding that patients do not conceptualize their experience of illness into a neat list of symptoms is critical to improving patient-physician communication. Furthermore, many patients might not notice gradual changes and will not report them even if asked open-ended questions. The astute physician will elicit critical information by providing examples more recognizable to patients; instead of asking, "Are you experiencing memory problems?" a question such as, "Are you having more difficulty remembering your grocery list?" might be more salient.

Limitations of the Study

We characterized nearly all patients as being in surgical remission based on their use of CRM; the survey methodology did not provide a more definitive way to ascertain if this was correct. However, reduction in HRQOL in CS despite biochemical remission is well established and our findings are in line with these previous reports.[2,4,5,7,9–14,21,22,28,40,41] Furthermore, the validity of responses unrelated to CRM are not contingent upon biochemical data supporting remission because they describe the experience of the overall recovery period.

Additionally, our data were collected in the past decade, raising the question of whether the postsurgical experience has improved. Recent studies suggest patients continue to report unmet needs regarding postsurgical care, including a lack of information about what to expect during recovery and a desire for more support from health care professionals, employers, family, and support groups.[16,17] We believe that this continued discontent reflects a lack of physician consideration of the patient experience, and further suggests the importance of a patient-centric phenomenologic approach to recovery. Regardless, an update on whether patient-provider relationships have evolved is certainly of interest.

Further limitations of this study include the recall bias inevitable when asking patients to recount their experience of illness, as well as low response rates to some questions. Also, recruitment through the CSRF may have influenced our findings because patients who actively participate in support groups may not be representative of all CS patients. Despite this, raising physician awareness of the negative aspects of recovery for some patients remains important. Finally, our findings may not be generalizable to patients with ectopic ACTH-secreting tumors, who may experience the added complexity of possible oncologic disease.

Opportunities to Improve the Experience of Recovery From CS

Our study, the first to compare patient and provider perspectives of the CS recovery experience, revealed divergent understanding of recovery between patients and physicians. The gaps between patients' perception of the adequacy of information on recovery, the high number of physicians asserting that they provided information, and different perceptions of the time to full recovery all suggest different understandings of the word "recovery." When approached from the epistemology of science and medicine, "recovery" may mean normalization of biochemical data, whereas when understood from the patients' narrative of the experience of recovery,[42] many additional factors may be summed in the concept of "recovery." It has been noted that physicians approach disease from the perspectives of diagnosis, treatment, and prognosis, which is a Boolean prognosticator that does not actually predict the future for the patient. By contrast, patients seek explanation, cure, and prediction of their course.[36] When physicians fail to understand a patient's conception of recovery and provide information that only meets their own definition, it is not surprising that the patient feels resentful and physicians feel inappropriately categorized.

Overall, our findings reveal patients' desire for more information from physicians on postsurgical recovery, including its duration, what symptoms to expect, and helpful coping mechanisms. We suggest use of written materials, as well as reinforcement of the concepts related to recovery at each visit, to improve patient education. Physicians might use the information from these surveys and their own patient's response to open-ended questioning to create a more diverse toolkit to cope with the challenges of recovery. Additionally, explicit education of partners and family may increase social support and help others to accept the difficulties encountered during recovery. We hope that our findings will lead to greater physician understanding of recovery from this disease and foster deeper discussion and understanding between physicians, patients, and their families.